Tuesday, 27 October 2020

Gina's story: BRiC for Breast Cancer Awareness

Be the first to comment!


I finished radiotherapy just as lockdown started, my oncology check up was a 30 second call to see if I was ok, there was a huge nothing, no support nothing, just news of other cancer patients not getting their chemo or radio this caused a lot of guilt in me, covid has meant not dealing with the emotional impact.




- Gina

Sunday, 25 October 2020

Debbie: BRiC for Breast Cancer Awareness

Be the first to comment!

 

Hi everyone, I wanted to say thank you for the overwhelming support I was offered yesterday (by BRiC members.) I reached out and the response was incredible.

In any circumstances, a diagnosis can be an isolating and frightening thing. However, with Covid too, I feel we are all living in extraordinarily difficult circumstances.

My situation with secondaries has changed quickly and as a result I feel/felt disempowered and very lost. I slipped into being a patient and not me. I really miss my monthly support group, contact with Macmillan has only just been reinstated and while everyone at the hospital is lovely, I do not feel part of the process.

Yesterday many of you offered such compassion and support. I was also offered excellent information that means I can have some agency and know better what questions to ask. I am so very grateful.
I'm still on rocky ground but picking my way forward instead of feeling frozen to the spot.

This is such a wonderful space, thank you all for being wonderfully you xx
- Debbie



#breastcancer
#breastcancerawarenessmonth
#mentalhealth
#pinktober
#resilience
#secondarybreastcancer
#metastaticbreastcancer

Friday, 23 October 2020

Bal's story: BRiC for Breast Cancer Awareness

Be the first to comment!

 

All my treatment finished 5 years ago, reaching this milestone, I should be jumping up with joy but instead this has created a form of numbness inside me, a constant reminder of all the detrimental effects it has had on my healing process and that of my family.

My follow up mammogram and ultra scan appointments for September have been cancelled and rescheduled for next month.

These uncertainties push my anxiety levels at an all time high!

- Bal, dressed in pink, on Wear It Pink day

Thursday, 22 October 2020

Things we wish we'd known: BRiC's Collective Voice

Be the first to comment!


BRiC provides insightful nuggets of advice that we wish someone had told us at the time than we had to learn through experience.

“I think knowing makes me better able to cope. Not knowing leads to nasty surprises, a lot of fear and sometimes thinking that you're going mad.”

The shock
“I think initially it took me a while to accept or understand that you go into shock upon diagnosis as soon as I realised I could start to get my head round it.”

That everything in your life is about to change
“I wish someone had told me how this would change me and my life forever. That I will forever fear a recurrence and that nobody outside of this community will understand that. I wish I had known that support was vital, that I needed to take care of myself. I'm glad to be here, and I'm grateful. But life has never been the same.”

“Life for me also is not the same....I have had to tell them that I will not be allowed to return to my post due to the physical limitations. It’s really tough.”

“I wish someone had been forthright about having to make permanent adaptations post treatment and how quality of life will be, not may be, affected going forward.”

That the fear of recurrence – it never goes away
“I wish I knew how everyone else around me would move on when treatment was over and get back to ‘normal’ while I still feel mired in fear and fatigue. I wish I’d known how hard it would be to explain to those who haven’t had cancer that the fear never goes, that you can’t just ‘get over it’. That every ache, pain, scan, test is terrifying and that being told ‘don’t worry about it’ is frustrating and diminishes how real the fear is.”

"that once you have secondaries this fear does not go away. Scans are more frequent and any hint of progression throws life back up in the air as you run through another line of treatment. Ongoing scanxiety is all too real"

That I will have a meltdown after active treatment
“At the end of active treatment i had a complete emotional meltdown and seriously considered suicide. I felt i couldn't tell the medical team who had worked so hard to get me to that time. When i did break down during Herceptin treatment i was told these feelings are common at the end of active treatment and especially after sepsis (which i'd been hospitalised with weeks before). I was furious that i wasn't warned to look out for this, i spent weeks in emotional agony terrified to ask for help.”

“my breast surgeon told me at my first appointment when diagnosed don't worry I'm confident we can cure you. Well yes you cut the cancer out but now the fun really starts and I wasn't prepared for that”

“I wish someone had told me that after treatment finished I wouldn’t be able to forget about it as if it had never happened.”

That end of active treatment was the beginning of my journey

“I wish someone had told me the truth when I walked away from my final radiotherapy: the truth that this was the beginning of the journey rather than the end. I would also like to have known how dismissive some friends and family would be about any continuing worries. Almost all greeted me with 'well that's done, how lucky it was caught early, all better now.' I would like to have been informed about secondary breast cancer, and I wish someone had told me how lonely the fear would feel”

“I remember my family took me out to dinner to celebrate. I couldn't eat and spent the evening fighting back tears. Then I stayed in bed for several days, exhausted to the core.”

What Chemobrain is

“I wish I knew about chemobrain and forgetfulness, memory loss, difficulty concentrating and paying attention, and how this can affect my self confidence and self-esteem for a long time. I wish I was told that I can be feeling like a zombie and that it will be hard to go back to work.”

“I wish I had been warned about the negative cognitive effects of chemotherapy long after treatment has finished and what to do to improve brain function recovery.”





That I need time to grieve my losses
“I wish someone had told me a breast cancer diagnosis means you have to give yourself time and space to grieve your losses. You lose breasts, hair, feeling healthy and carefree, your femininity, the woman you used to be beforehand, your sanity and all in one fell swoop. Nothing will ever be the same again so, be kind to yourself."

“I wish someone had told me that the psychological impact on my hair would be bigger than the impact of the mastectomy. As you say knowledge is power (or as Foucault would say power (those who set the agenda) is knowledge”

“I wish I had known that I would grieve losses that I had no idea of.”

“I wish someone had told me that my hair loss after the first chemo was so dramatic I wish someone had told me the angst will go and I will be fine”

That hormone therapy can affect your sexuality

“I wish someone had told me about the lack of sex and intimacy lack of libido.”

“I wish someone had told me that I would fear sex and that it would be painful because of lack of estrogen due to Tamoxifen.”

“I wish somebody had told me about how Letrozole on top of ovarian radiation would cause vaginal atrophy making sex painful and ….. eradication of a healthy libido. It’s keeping me alive and of course I’m grateful for that but it’s the fact the impact of the drug on my body has never been discussed. I wish somebody had told me that worrying is an utter waste of time because life is short”

“Then no mention of the impact of the hormone therapy. I do wish the doctors had been honest, realistic.”

That treatment after-effects are harsh

“I wish someone had told me about the after- effects of treatment also. The pain from bones and joints, damaged intestines severe neuropathy, developed arthritis in my hands from anastrozole, and the psychological effects. I was always a happy person, now I have become a bit more serious, developed depression, thinking about the future and reoccurrence, was told I have only an 18% chance of being alive in ten years. I sometimes wonder was it all worth it. But life goes on and we have to change and face new challenges “

“I wish that I was told about how Tamoxifen and AIs would affect you cognitively, reduce your libido and make intimacy painful and difficult. “

“I wish I'd been told that radiotherapy doesn't just make the breast firm, it can also cause distortion and feel painful to touch.”

“I wish someone had told me about post mastectomy pain and nerve pain straight after surgery. It was a shock and frightening the different pains and sensations I had. Now I’m left with pain that no one seems to think is bad enough to worry about because I manage without painkillers. It has a huge effect on me emotionally though.”

That I could suffer chronic fatigue

“that I would have to alter my working patterns in order to manage the chronic fatigue.”

“I wish I had known how much the fatigue would challenge me in the long term. I am still suffering with it 9 years later and when I get tired I get weepy and irrational which I hate.”

“Fatigue meant l eventually had to give up my teaching job.....just didn’t have the same stamina either.”

What secondary breast cancer is

“I wish someone had told me the stats on primary BC developing in to secondary BC, and what signs to look out for. I thought when I had “beaten” it, that that would be it....then less than a year later.....BAM.

“I wish that secondaries were more talked about and less of a taboo conversation...”
That I would experience menopause

“I wish I knew that I would experience menopause and what to expect .... this has been so hard for me.

That the positivity cloak can be too heavy to wear

“I wish someone had told me about how much pressure there would be to be 'positive' (not just realistic and rational) and that there are so many possible reasons that 'it was my fault' (which it ain't).”

“I hate the implied pressure of “you must be positive, or else”! Or worse still the implied finger of blame “you brought this upon yourself by your lifestyle choices”! Yes I enjoyed cake/chocolates/a glass of wine/carried a little extra weight just like thousands of other women who DO NOT get diagnosed with cancer!”

“if I had a pound for every time I’d been told how positive I am, I’d be spending the rest of my life on the Riviera. The references to positivity are often used by well meaning people when they don’t know what else to say: ‘be postive’, ‘stay positive’, I don’t think the cancer really listens “

“the first moment i realised it was bad news was when the nurse in the ultrasound suite said something like "a positive attitude is so important" i wasn't feeling positive then and it made me feel like a failure.”

"So much better if told that need time to mourn - will pick self up again ... but also positivity and battling, etc. ultimately doesn't decide the outcome!”

That my medical team could have pre-warned me about side effects

“I wish the hospital were more honest about the permanent side effects and not just tell you about the side effects during active treatment.

“I wish the medical team were more upfront about recovery time, likelihood of complications post treatment eg Lymphoedema and cellulitis to name but two.”

“I specifically asked the medical team to tell me everything about the treatment and what could happen but all I got were booklets that suggested that the majority of patients would be back to “normal” circa 12/18 months post treatment what a load of wishful thinking that was.”

“I don't think I really wanted to know about what was coming in terms of treatment and after effects.....I would have spent too much time worrying about the possible impending problems.......saying that, I have been very lucky in that if I had a problem, I had a good unit/team at the hospital and online, so I could ring/ask questions and get answers almost immediately. That was a life saver. I put my trust in what they were telling me was going to be the most effective treatment”

That I would never feel the same again
“But most of all I really wished someone had pre warned me that I would never ever feel well again (as I had pre treatment) and that it would become my new normal”

“I wish I had known at diagnosis that the impact of treatment was not just the first months/year but so much more long-lasting.”

That cancer is NOT a battle to win or lose

“I hate the fight/battle language. Makes it seems that those who die of cancer are weak or failures in some.”

“I feel like that word has been thrown at me whenever I’ve tried to tell someone how I’m feeling. It makes me feel like I’m failing. When I felt so low last week and posted on this page it was so lovely not to hear it”

“I’ve found friends and family very hard to deal with and pretty much avoid them so I don’t have to try to explain myself.”

That support groups are invaluable

“Mentally you understand the physical side of the op, but the psychological side feels somewhat neglected. They keep saying there's support, but there's a long waiting list to access it”

“After my active treatment I found BRiC and with it the emotional support and understanding I need to keep me going.”

“Couldn’t have got this far without these kinds of support groups.”

“We need more timely info throughout our treatment and beyond - and an easy way of accessing it”

That the ‘new normal’ is hard to identify with
“that ‘normal’ doesn’t happen for many of us - then everyone around us thinks we’re just crap moaners ...”

“I have yet to come across one of those ‘back to normal in 12-18 months’ ladies. Good for her if she is out there but this is not achievable or real for the majority of us”

“I’d love to meet one just to find out why she’s so different to the rest of us mere mortals”

“When I saw him (my surgeon) last month about the continual pain, I was told I’ve got to stop worrying about cancer now and the pain will stop. Felt really told off.”



Sarah's story: BRiC for Breast Cancer Awareness

Be the first to comment!

 

I’ve cried tonight after work - I’m a primary school teacher and I don’t feel safe at all I’m exhausted



thankfully I’m off now for the rest of the week so having an orange twirl and a cuppa to celebrate.

- Sarah






Wednesday, 21 October 2020

Thursday, 15 October 2020

Not just one day; BRiC for Breast Cancer Awareness

Be the first to comment!

 

Secondary breast cancer is not just one day, it is every day.

Secondary breast cancer is the focus for awareness-raising for only one day (13th) out of the thirty-one days of October. (Breast Cancer Awareness Month). Yet most people do not know what secondary breast cancer is.

Most people do not know that:
- secondary breast cancer doesn't mean getting breast cancer twice.
- secondary breast cancer is not a less serious breast cancer.
- secondary breast cancer is incurable.

Treatment aims to slow down the spread of disease, relieve symptoms and give the best quality of life, for as long as possible. Some people live years, but only if they can access the best treatment possible, as early as possible. Delays due to Covid, or for any other reason, are unacceptable.

We sometimes read that it is not primary breast cancer that kills, but secondary breast cancer. The problem is, this way of thinking makes it appear that secondary breast cancer is a completely separate disease. It is not.

Women with secondary breast cancer were once women with primary breast cancer (unless they were diagnosed with secondary breast cancer at the same time as their diagnosis with primary breast cancer). Secondary breast cancer is breast cancer which has spread to other parts of the body. It is sometimes described as 'stage 4 breast cancer', 'advanced breast cancer' or 'metastatic breast cancer'.

It is thought that around 30% of women diagnosed with primary breast cancer go on to develop secondary breast cancer. Sometimes their disease cruelly returns years after the initial diagnosis. This is a very frightening possibility for those of us diagnosed with primary breast cancer, so frightening that a lot of us try to avoid facing our fear that our cancer might come back.




But sweeping secondary breast cancer under the pink carpet does a disservice to us all. Especially to women living with secondary breast cancer.

As secondary breast cancer receives even less attention for funding, it is imperative that our psychological needs are met and our voices are heard. Women with secondary breast cancer need women with primary breast cancer to support and advocate for them; women with primary breast cancer can be supported by, and can learn from other women with secondary breast cancer. Here at BRiC, we do not see primary and secondary breast cancer as separate entities, but instead, as being on a continuum, where a better understanding of both our common and specialised needs can foster greater mutual support and learning as well as advocacy for improved treatments.

Here at BRiC women with primary and secondary breast cancer have come together in unity. Together we are stronger.

Wednesday, 14 October 2020

Resilience in Secondary Breast Cancer: BRiC's Collective Voice

Be the first to comment!

 

Why is resilience important in secondary breast cancer;and why BRiC as a group has not separated primary and secondary women with breast cancer.

“Secondary Breast cancer is not about dying, it is about living life to the full while you can”

The importance of resilience and how to become resilient is a constant theme in our group. Many of our members talked about how their resilience carries them through whether they have primary breast cancer or secondary breast cancer. Resilience helps us to “live with what we have and choose life”. For everybody, whether they are primary or secondary sisters, resilience is about not pretending things are ok, whilst getting on with life. We felt it was about acknowledging that we may feel overwhelmed, and giving space to those feelings, and that we can be angry and sad whilst also living life and taking joy. This theme of our resilience pulls us together. Resilience is “experiencing the emotion, living with it and going forwards”.

Several members noted that they felt abandoned by their BCN, that the BCN’s only supported primary breast cancer sisters : “ I got dropped by my primary nurse like I was toxic” “I never see a BCN now, when I had my primary they were at every consultation” One member looked for a SBC support group, but her nearest were 20-30 miles away. These members were tenacious and determined in seeking help for their feelings once the SBC had been diagnosed, and found help in local hospices and counsellors. Our BRiC group has the emphasis on resilience and these members sought support here, and found it.

Many primary breast cancer sisters discussed feeling scared by the idea of recurrence or secondaries but felt the inclusive group here has educated them about how secondaries may present, something that seemed sorely lacking when we are discharged from our oncologist and not given the warning signs to look out for, or even told about the possibility of secondaries. “Education about mets can be scary, but the mix of primary and secondary sisters gives us a chance to keep informed” and that it is “possible to live with a diagnosis of secondaries”. One member said “it can be scary to read secondary stories, but it has encouraged respect and admiration for those living with mets”. Some members said they have become better at tuning into their bodies” and have “less fear” because of our secondary sisters. There is a saying “knowledge is power” and our knowledge means we are less fearful.

Our diagnosis may differ from primary to secondary but we have a lot in common. We may feel overwhelmed, by our disease, by the treatment, by the impact on our lives. We all need a place to talk about our emotions and fears, be it about our disease, our treatment, our families, our work, or living our new normal.Worries and frustrations about body confidence, side effects and relationship concerns link us all, primary or secondary. We can all be ok one day and then find our resilience lacking the next. We are all scared about disease progression. Our diagnosis of breast cancer is always life changing, whatever the stage, or the treatment.




So, what do we all gain from our group, a group that does not separate between primary and secondary breast cancer - that sees both as on a continuum? Over half of our members are secondary breast cancer sisters, and when recurrence happens in 30% of cases, that high proportion demonstrates how much the secondary sisters get from the group. We have a space to be together, for our secondary sisters to not be “boxed into a corner” and made to feel they are contagious. The emphasis on resilience of this group has helped members find a safe place, a resilient place where we aren’t terrified any more. We are stronger together, like the spokes of an umbrella. We can raise a hand and say “I need a hug, I am struggling today” and there is one there. We don’t have to put our “I’m coping fine” masks on here, wobbles can be honest and heartfelt. We have new hope, of living longer than stats may tell us we will, of living better and with a new peace of mind. We have learnt that “here and now is the best time, as no one is guaranteed a future”. If we wish to face the truth about an uncertain future, the support and help is here. More people talk about secondary breast cancer now, which empowers us to speak out about our own fears and experiences. We have learnt tools from the group to support ourselves, to practice self care and living in the moment.

Breast cancer can put us on a lonely path, but together we can “inform, change perceptions and build resilience”. We are stronger together.